Well my sweet peeps, my fight continues …. but now I am attempting something new in the hope I will conquer Stiff Person Syndrome, and help many other beautiful souls too, who also fight the ghost xxx
The aim of the e-petitions that have been created by myself and my “One in a million ” team, has the soul purpose of hopefully , swaying the powers that be, to look at HSCT (stem cell transplant procedure) as a cure/remission treatment for SPS. I fully understand the hesitancy from the UK medical professionals, as HSCT is still in its infancy stages of development for SPS. Trials that are taking place in other areas of the globe are proving a success. Therefore, I think it is time that the UK joined our neighbouring countries, and fought SPS as one. A few months ago,the first ever medical journal was published by a magnificent Doctor from Canada , DR Atkins, providing substantial evidence about two of his beautiful patients who were fighting the ghost like I am …. but are now symptom free. One lady has been cured/in remission for almost 5 years, and another for almost 3 years. This truly is astounding, and more and more are now following in their footsteps. I am desperate to persuade my medical team to accept me as the first person in the UK with SPS , as part of the HSCT trial. By doing so, I silently wish that I will be able to open the door for many other precious peeps who are suffering in silence. So along with all the information I have provided my Neurologist with, I am hoping to include many signatures to support my case. However, my heart sinks a little, as I need at least 100,000 signatures for the Government to at least consider my plight. I am running out of options fast , and really need to acquire the “power of the people”. Without the “nod” from my UK team, I will have no option but to continue my original plan, and go abroad and pay privately for this treatment ….. a treatment of which we have all the facilities, expert medical minds and protocol. The UK conduct this procedure to help other patients …. so why not do the same for those with Stiff Person Syndrome?
There is so much I wish to write and tell you about, but I have to end here as I am due back in hospital today. Yes , my 11 day break is over, and its time for another 3 consecutive days of IVIg. I am led here wishing to myself for a successful round, as my previous one left me very pooly, suffering increased spasms, oxygen drops, rapid heart rate and meningitis like symptoms. However, I will continue with my sparkly smile, and fight until i cant fight any longer.
I would be deeply thankful if you could place you signature on the relevant e-petition, not just for me, but for all peeps with SPS in the UK. There are two links, one for UK residents and one for those internationally based.
The UK link is http://e-petitions.direct.gov.uk/petitions/71454
The international link is http://www.ipetitions.com/petition/international-make-hsct-treatment-for-sps
I will write again soon, thank you for your love, compassion and support xxx